Hi, J, and hello everyone! Nice to see some people still here. I have been away from the board, but still check in periodically. Funny how when you are panicked about your diagnosis and the disease is running rampant through your body you just can't get enough info, but take heart. Once you accept that you have a chronic disease and that you have to make some changes to your life and you can't do some things that you used to do, it gets easier. I worry about the damage that will accumulate as the years pass, but I can't focus on that on a daily basis. I guess I am in maintenance mode with my lupus, it is currently well-controlled, I am taking 5mg of prednisone and some plaquenil daily and doing well. The only thing is I've been trying to get pregnant for a year and a half without success but I very much count my blessings every day.

J, as for bone pain, yes, I had it a lot before my lupus was under control, and still occasionally have it. It is a very unique pain and hard to describe, you just know when you feel it, oh, so THAT is bone pain. I knew the first time I felt it that I had never had a pain like it before, I just didn't know why I was having it. You know it is not a pain in your flesh, it is a very deep ache and you can tell it must be in the bone. The ache sometimes runs the length of the bone. This is different from joint pain.

Similarly, there is this pain in my lymph nodes, usually the one under my arm, but sometimes in my neck, when my lupus is flaring or I am fighting an infection. Another very unique pain, with swelling and some soreness, but sometimes also a sharp, quick pain that feels to me like the node had some kind of spasm or contraction or something. I told my doctor this and he poo-pooed it, but I know what I felt.

To have bone pain when fighting an infection would not be out of order, since in the center of the bone is where the white blood cells that fight off infections are made and this whole production kicks into overdrive until the infection is under control (or if you have uncontrolled lupus and your wbc count is way high) unless you are taking drugs that suppress this reaction.

J (3love), The "bone pain" I get is burning along the long bones of shins & arms. It's worse when I'm in a flare & spikes when humidity is high. I've had it since age 13, with some quiet years; but then it returned with a vengeance when more "missing pieces" of lupus finally materialized (characteristic rashes, anemia, anti-Ro antibody, etc.).

The pain occurs minimally a few days a week, in varying degrees. During a flare, it can endure for weeks. In addition to Plaquenil, I take Advil daily, more when pain dictates. During a rheumie follow-up, I once went on & on about this: I was very tired of it all, etc. My rheumie responded, with a bit of a twinkle, "Well, lupus IS a connective tissue disease..."

Hope this is what you're after... Yell if not, OK? With my best wishes, Vee

Vee, you said that later on things materialized.....are you talking about the rashes? Did you have rashes in the beginning or did they appear years later?

Vee, I'm not sure if I asked you this question before but here it goes again
With lupus can you have antibodies show up on a lyme western blot? This has got me confused. With Lupus doesn't the body make antibodies against itself?

I have pain in my bones whenever the weather changes up or im flairing up. I have it in all my long bones. The first time it happened my mom though that i was possed by the devil because the pain was so intense i couldnt control my arms or legs. I have been dx with SEL but i have a mixture off all the symptoms its wierd i think i have a little of everything type of lupus. my mom says im her experimental baby because even the doctors are confused.
Hope it helps

I am new to this, was just diagnosed with SLE and am on Plaquinel and was wondering if you have any itching....Thankyou Sassybloomers65

Quote:

Originally Posted by VeeJ

J (3love), The "bone pain" I get is burning along the long bones of shins & arms. It's worse when I'm in a flare & spikes when humidity is high. I've had it since age 13, with some quiet years; but then it returned with a vengeance when more "missing pieces" of lupus finally materialized (characteristic rashes, anemia, anti-Ro antibody, etc.).

The pain occurs minimally a few days a week, in varying degrees. During a flare, it can endure for weeks. In addition to Plaquenil, I take Advil daily, more when pain dictates. During a rheumie follow-up, I once went on & on about this: I was very tired of it all, etc. My rheumie responded, with a bit of a twinkle, "Well, lupus IS a connective tissue disease..."

Hope this is what you're after... Yell if not, OK? With my best wishes, Vee

3love, I had my first bad bout of shin/long bone pain at 13. My rashes appeared many years later, starting in my late 30's.

The tests for autoantibodies seen in lupus are separate & distinct from Lyme western blot. Look at the "sticky posts" at the top of the thread list. Locate the one about "test results". In it, you'll find a link. Go to it. Drill down into rheumatology, then into lupus. There you'll find more info on tests---and on symptoms (etc.) also. Best wishes! Vee